Ros Wood

QUEBEC TALK

I'm now going to talk about the diagnosis of endometriosis in Australia.

From its inception our Association has been concerned about the long diagnosis delays experienced by women with endometriosis in our country. As part of our long-term goal to reduce the delay in diagnosis we have completed two major research projects. My comments are based on the findings of those projects.

When we conducted our initial study in 1989 the average time between the onset of symptoms and first diagnosis was 6.1 years. Clearly, that delay is far too long.

The time span was made up of two components. The first of these was the time it took the women to report their symptoms to a doctor. This can be regarded as the women's contribution to the overall delay. The average length of this delay was 1.6 years.

The second component was the delay between first reporting the symptoms to a doctor and being diagnosed. This can be regarded as the doctors' contribution to the overall delay. The average length of this delay was 4.3 years. Again, we believe this is far too long.

These results are nearly 10 years old and we have not had a chance to repeat the study to ascertain the present situation. However, we suspect that the overall situation is still much the same, with two exceptions. Firstly, we suspect that the Association's work in raising the awareness of endometriosis among the general public has reduced the average time it takes women to report their symptoms to a doctor. Secondly, we are fairly sure that more women are now being diagnosed while in their late teens and early twenties.

However, although a few GPs are suspecting endometriosis more quickly and at an earlier age, the majority are still impeding diagnosis because of their poor knowledge of the condition and its symptoms. Few GPs recognize any symptoms other than the four classical symptoms of dysmenorrhoea, pelvic/abdominal pain, dyspareunta and infertility. In addition, their understanding of the features of the symptoms they do recognize is very poor. Consequently, they see endometriosis as a confusing array of non-specific symptoms without any apparent clinical indicators or patterns to guide them in diagnosis and referral. Thus, they are unable to recognize the disease when confronted with it and if they do suspect it they do not know when to refer the women on.

Furthermore, the lack of awareness of endometriosis as a common cause of symptoms in younger women means that endometriosis is not at the forefront of their minds. Consequently, they diagnose by a process of elimination, preferring to look first for conditions that are seen to be more common than endometriosis. If they do think of endometriosis, they only think of it when all other options have been exhausted.

The net result of all this is that too many women with endometriosis have relatively long and tortuous pathways to diagnosis. They get dismissed outright or they get shunted from pillar to post while their uninformed GP's try to find a physical or psychological cause for one symptom or another. Because of what they have been taught their GPs don't consider the possibility that their symptoms may be due to one thing: endometriosis.

Many GPs are well aware of the dearth of knowledge that they or their colleagues have about endometriosis and many of them are keen to learn more about it. It's up to all of us here to teach GPs about the true nature of the condition, its symptoms and its diagnosis. Until GPs can readily recognize the disease long diagnosis delays will be the norm.

Spontaneous & prompted recognition of the symptoms of endometriosis

Spontaneous & prompted recognition of the features of the nominated symptoms

 © Ros Wood 1998

Endometriosis Associoation of Australia (Victoria)
37 Andrew Crescent
South Croydon
Victoria Australia, 3136
PHONE +61 3 9870 0536
FAX +61 3 9870 3007